The Burzynski Clinic Threatens My Family.

Tonight, the entertainer Peter Kay will be performing the first of two special sell-out gigs in Blackpool to raise funds for a very poorly four-year old girl with brain cancer. The story of how this fundraising event came about was told in last weekend’s Observer. However, the £200,000 being raised looked like it was earmarked to send little Billie to a clinic in Texas to enrol in a trial that was using an unproven and questionable form of urine-based treatment.

I wrote about my concerns with this and how this might be giving false hope to a vulnerable family and how it may be funnelling money to an unproductive cause. Dr Burzynsli, who runs the clinic, is not allowed to treat people with cancer with his unproven antineoplaston therapy. He is, however, allowed to enrol people in trials. And he does so, and charges them hundreds of thousands of dollars. He has been doing this for over 30 years without producing the substantial evidence from these trials that would convince the scientific community that he has an effective and safe treatment.

It is a difficult thing to write about given the pain that must be felt by the family. The goodwill of those wanting to help cannot but underestimated. But I believe this to be an important issue. And it appears that others do too, such as set out in this excellent summary by blogger Josephine Jones.

However, within 24 hours of writing my article, I received the following email from a Marc Stephens who claimed to represent the Texas clinic.

Please allow this correspondence to serve as notice to you that you published libelous and defamatory information. This correspondence constitutes a demand that you immediately cease and desist in your actions defaming and libeling my clients.

Please be advised that my clients consider the content of your posting to be legally actionable under numerous legal causes of action, including but not limited to: defamation Libel, defamation per se, and tortious interference with business contracts and business relationships. The information you assert in your article is factually incorrect, and posted with either actual knowledge, or reckless disregard for its falsity.

The various terms you use in your article connote dishonesty, untrustworthiness, illegality, and fraud. You, maliciously with the intent to harm my clients and to destroy his business, state information which is wholly without support, and which damages my clients’ reputations in the community. The purpose of your posting is to create in the public the belief that my clients are disreputable, are engaged in on-going criminal activity, and must be avoided by the public.

You have a right to freedom of speech, and you have a right to voice your opinion, but you do not have the right to post libelous statements regardless if you think its your opinion or not. You are highly aware of defamation laws. You actually wrote an article about defamation on your site. In addition, I have information linking you to a network of individuals that disseminate false information. So the courts will apparently see the context of your article, and your act as Malicious. You have multiple third parties that viewed and commented on your article, which clearly makes this matter defamation libel. Once I obtain a subpoena for your personal information, I will not settle this case with you. Shut the article down IMMEDIATELY.

GOVERN YOURSELF ACCORDINGLY.

Regards,

Marc Stephens
Burzynski Clinic
9432 Katy Freeway
Houston, Texas 77055

Now, there were many odd things about this. And we shall come to a few of those. And I know that several other people have been receiving similar threats. I know of another very prominent UK blogger who received a similar email a few weeks ago and I am sure this too will come to light soon. You will not be impressed.

However, for now, I replied,

Dear Marc

I am sorry to hear that your client believes there is a problem with my web post.

My wife is due to give birth today, so you must forgive me if I am unable to respond promptly to your inquiries. In that light, I would kindly ask that you respond today with responses to the following points so that we may conclude this correspondence to our mutual satisfaction.

As I am sure you would agree, it would be unreasonable to demand that I remove a post simply because your client may hold divergent views. However, I do wish to make it clear that should there be factual inaccuracies in my writing or there is opinion that is unreasonable, then I am more than happy to examine the issue closely and make the necessary amendments.

You state that there is material in my post that is factually incorrect. I would therefore ask you to state explicitly the wording in my post that you feel that is wrong and the reasons that it is wrong. I am keen to ensure my post is as accurate as possible given the subject is a matter of public health.

Please be assured that when I receive clear information on the wording you feel is problematic, I will deal with the matter as soon as I can.

Yours,

Very quickly, I got this response,

FINAL NOTICE TO CEASE AND DESIST

I am not here to grade your article, or play games with you. You fully understand what you’re doing, which is why you are trying to hide behind your so-called “opinion”. You have a history of lying in your articles since 2008. All articles and videos posted from your little network are being forwarded to local authorities, as well as local counsel. It is your responsibility to understand when you brake[sic] the law. I am only obligated to show you in court. I am giving you final warning to shut the article down. The days of no one pursuing you is over. Quackwatch, Ratbags, and the rest of you Skeptics days are numbered.

So, since you have a history of being stubborn, you better spend the rest of the day researching the word Fraud, you better do full research on the relationship of Dr. Saul Green and Emprise, Inc., and you better do full research on Stephen Barrett who is not licensed, or ever was licensed. So his medical opinion is void, which I am sure you are fully aware of his court cases. So your so-called opinion means nothing when this is disclosed in court, and by law you must prove your statements are true. Your source of information are all frauds, and none are medical doctors. You being apart of the same network makes you guilty, in the eyes of the jurors.

Be smart and considerate for your family and new child, and shut the article down..Immediately

You are still accountable for Re-publishing false information, and disseminating false information. None of the previous attorneys that contacted you about defamation had documented history in the courts. We have well documented history which is on record with the court, which is available to the public. So, when I present to the juror that my client and his cancer treatment has went up against 5 Grand Juries which involved the Food and Drug Administration (FDA), the National Cancer Institute (NCI), Aetna Life Insurance, Emprise, Inc., Texas State Medical Board, and the United States Government, and was found not guilty in all 5 cases, you will wish you never wrote your article. In addition, my client has treated multiple cancer patients around the world, which is fully documented by the FDA, NCI, and Kurume University School of Medicine in Japan, and has finished Phase II clinical trials with FDA approval to move forward with Phase III. I suggest you spend more time with your new child then posting lies and false information on the internet that will eventually get you sued, which will hurt you financially. I am going to pursue you at the highest extent of the law.

If you had no history of lying, and if you were not apart of a fraud network I would take the time to explain your article word for word, but you already know what defamation is. I’ve already recorded all of your articles from previous years as well as legal notice sent by other attorneys for different matters. As I mentioned, I am not playing games with you. You have a history of being stubborn which will play right into my hands. Be smart and considerate for your family and new child, and shut the article down..Immediately. FINAL WARNING.

Regards,

Marc Stephens

This foam-flecked angry rant did not look like the work of a lawyer to me. And indeed it is not. Marc Stephens appears to work for Burzynski in the form of PR, marketing and sponsorship. This does not look like very good PR to me, but I guess that does not matter too much when newspapers like the Observer can do a much better job for you.

Lawyer or not. It is worth taking such threats seriously, and so I persisted,

Dear Marc,

Once again, can I ask you to document the precise nature of your substantive concerns about my article. I shall then be more than willing to act accordingly.

Regards

And the response,

As I mentioned, I will not advise you on how to break the law, or go around the law. Once the article is shut down I will consider explaining to you.

Regards,

Marc Stephens

One last try,

As I a sure you are aware, the pre-action defamation protocol requires you to state the wording you object to. Without such detail, it is difficult for me to act appropriately. Your demand for me to remove the entire post is unreasonable without there being clear and specific grounds for me to do so.

I urge you to treat this matter as seriously as you say it is.

Regards

And a final response,

You better start paying attention. I do not have to be verbatim with you. Let me quote what I just written in my previous legal notice to you:

“We have well documented history which is on record with the court, which is available to the public. So, when I present to the juror that my client and his cancer treatment has went up against 5 Grand Juries which involved the Food and Drug Administration (FDA), the National Cancer Institute (NCI), Aetna Life Insurance, Emprise, Inc., Texas State Medical Board, and the United States Government, and was found not guilty in all 5 cases, you will wish you never wrote your article. In addition, my client has treated multiple cancer patients around the world, which is fully documented by the FDA, NCI, and Kurume University School of Medicine in Japan, and has finished Phase II clinical trials with FDA approval to move forward with Phase III.”

You better re-read your article.

I believe my article was raising serious issues concern on matters of public health and the ethical issues of charging hundreds of thousands from the desperate parents of terminally ill children. It is an important set of issues that the Observer failed to pick up on in an uncritical piece that may well send more parents down a path that has the potential to do serious harm.

In science, the truth emerges after ideas have been subjected to thorough experimental testing, and the results critically appraised by peers. This process can be harsh – and it needs to be. In medicine, despite the best of intentions, it is possible to do great harm when you believe you are doing good. Ideas only emerge as bad because of intense critical appraisal.

Dr Burzynski presents himself as a man of science. But, I would say to him and his associates, a man of science would welcome critical appraisal, would publish all the data he has, and allow the world to come to conclusions based on how good that evidence is. A man of science would not threaten critics and try to silence them. That is a sure and certain way that you will end up harming patients.

Such actions are typically not those of someone concerned with scientific truth but of someone concerned with protecting a multi-million pound income stream.

I challenge Dr Burzynski to show me that these are not his intentions, but that indeed he is a man of science concerned only with helping patients with cancer and discovering scientific truth.

To that end, I ask of him the following:

To immediately cease treating all patients with antineoplaston therapy until such time that independent peers can demonstrate that the therapy delivers greater benefits that harms and provides sufficient cost benefits.

To immediately stop enrolling children with cancer into his trials and asking desperate parents to pay huge sums of money for the privilege. Future trials should be funded by third parties to avoid placing vulnerable patients, who would do anything for their children, in potentially exploitative situations.

To turn over and publish all data collected over the past 30 years on patients treated for independent peer review to determine if there is a body of evidence to suggest antineoplaston therapy may be worthwhile.

To concentrate on defending yourself in the upcoming medical license hearing with the Texas Medical Board and to rely on using the evidence of your conduct and your clinical data rather than relying on ‘placard waving’ supporters drummed up by PR campaigns.

Cease threatening those who criticise you with legal action and engage with them in discussions of the evidence, as any good scientist would.

Such a course of action, I believe, would be in the best interest of current and future patients and demonstrate a commitment to truth, science and health. You may feel that your reputation is being lowered by such criticism. But reputations must come second to the well-being of small children who are desperately ill with cancer.

164 Comments on The Burzynski Clinic Threatens My Family.

You have my entire support and I agree that the letters as published are merely bullying attempts, until such time as precise details of the disputed statements are produced. Perhaps Dr Burzynski and Mr Stephens should look up the following terms “Boiron Italian blogger” and “Streisand effect”, as an example of how not to resolve disputes amicably.

I am hugely impressed with the way LCN has handled the rude and unprofessional threats. I’m also relieved that he has received such emails before me and dealt with them in this way. I don’t think I would have had the guts.

I haven’t yet had any legal threat from anyone claiming to work for Burzynski. I expect it is only a matter of time…

By the way.. if I were you I’d follow up the post by Kat of Cancer Research UK (below)… I’m sure that they would be a valuable legal resource for you if these people are foolish enough to try to take you to court.

I am not a lawyer. However, I wonder if this Marc Stephens person is also not a lawyer, at least one not licensed to practice law in the state of Texas. A quick check through the State Bar of Texas website (http://www.texasbar.com/am/template.cfm?section=Advanced_Search) looking for the last name ‘Stephens’ and scanning entries with a first or middle name of Marc (or Mark) turns up a few entries, but none which seem relevant (i.e. near Houston.)

Again, I’m not a lawyer so I don’t know whether non-lawyers can issue Cease & Desist letters or not. Still, I’d ask someone who does know Texas law whether this Marc Stephens person is effectively impersonating a lawyer and if his behavior is legal or even worth worrying about. I have an attorney friend in Austin, TX I can bounce this off if you’re curious.

This is the motherfucker who went after my friend whose son was dying of brian cancer! I had to tell her that if what he was saying were true that hed have multiple Nobel Prizes. Thank you for giving me a name. I will not forget it.

Finally, I turned up a case analysis of a sad custody/malicious prosecution case regarding a child with malignant cancer and the Burzynski Clinic at http://www.law.com/jsp/tal/PubArticleTAL.jsp?id=1202477035215&slreturn=1 While the Burzynski’s involvement is tangential, it illustrates two points: first, the “what’s the harm…?” issues with alt-med, and second, that some alt med clinics are actually responsible enough to not get involved in cases involving minors. One may chalk that up to being self-serving and not wanting to get involved in a dispute between parents and Child Protective Services but I find it interesting that Burzynski would take the money & risk prosecution.

‘Brave maverick doctor’ or ‘amoral grifter’? Probably somewhere in-between. If only Burzynski would publish his data and subject it to peer-review we might not have to speculate where on this spectrum he resides. Until that happens, we can only guess.

Many thanks for standing up and being counted. Adding to your wholly praiseworthy forensic dissection of this disgusting practice by eliciting this level of semi-literate unprofessional bullying only reinforces the point. Let’s hope Peter Kay, The Observer et al have the grace to take the hint and retract.

I wonder if this “Marc Stephens” would clarify his status within the Burzynski Clinic organisation? The link you give clearly lists him as working in (or running) Marketing and Sponsorship for The Burzynski Patient Group, a support group who (according to the Burzynski Clinic website) meet weekly at the clinic and have the website you link to. There doesn’t seem to any mention of him on the actual website of the Burzynski Clinic. Could he therefore please clarify his relationship to Dr. Burzynski and the Burzynski Clinic and his status, e.g. attorney-at-law ?

What an idiot! To me they appear to be praying on the vulnerable whilst being protected by a privatised system (god save the NHS). Shame on the Observer too – surely this is only Daily Mail stuff these days?

Please keep exposing…if they do believe in what they do they can publish the evidence. Simples. On a plus side – his mardy reponse was much funnier than Peter Kay.

Justifiable concerns and questions have been raised, and the Burzynski Clinic needs to respond in an objective and professional manner with supporting high-quality evidence demonstrating efficacy, etc.

The dude doesn’t call himself a lawyer even, obviously a PR-intimidation lackey.

Obviously not helping Burzynsi’s case, should be clear. Why not work WITH the people that criticise you to show how they are wrong, as opposed to intimidating them, creating only more dissent through distroust & dislike. Shows nefarious motives to me, that don’t bode well for the science behind it all.

This moron must not be familiar with the Barbara Streisand-effect.

Also, I think the blogger who previously was harassed by these goons is Simon Singh, because his post on Burzynski WAS removed, and he is a prominent (the most prominent?) skeptical blogger on matters of medicine.

I thought this whole Burzynski business was rather interesting, having a penchant for underdogs & how they were treated by the medical establishment, but now they seem like just any other bullying quacks, damaging their own credibility, insofar they had any.

Libel laws are absurd. Should be replaced by ‘accountability laws’ that work the opposite way. YOU as a corporation or institution make extra-ordinary claims, we have the right to slam & sue YOU until you provide extra-ordinary evidence that it is so. Reverse-libel.

That’s the real offence, lying for profit by ‘medical’ corporations. Scepticism is never a crime, it’s a way to truth, don’t punish it, punish the profiteers who give people false hope.

While he does not pretend in as many words to be a lawyer, claiming to “represent” and frequent breference to “my clients” is obviously intended to give that impression, along with the use of the words “cease and desist”.

Workers in a number of fields describe the people for whom they work as “clients”. Lawyers and PR professionals certainly do, though one does expect a certain level of grammatical competence in anything they might commit to print. I think prostitutes would be another example and I think some of them do have rather poor levels of literacy. .

Why do proponents of ‘alternative’ cancer treatments rail against ‘Big Pharma’ because ‘they’re just interested in profits’, then line up to defend Burzynski (typical cost of a years treatment c.$40-60k)?

As has been pointed out elsewhere, a reputable scientist would respond to criticism with evidence, not lawsuits.

As Jack of Kent says, well done for standing up to yet more attempted libel chill, Andy – and good luck with the imminent family event. Let us know if we can help, beyond the re-tweet (already done).

Interestingly, just a day or two ago I saw a recent episode of the excellent US TV series Law and Order dealing with a doctor offering ‘miracle cancer cures’, but without any actual documented successes. I wonder who they could have been inspired by?

Sadly, I imagine they were probably spoilt for choice. Which is all the more reason this sort of stuff deserves a public airing.

How can anyone be so monumentally incompetent as to defame somebody, not to mention threaten them, in an anti-defamation notice? One can only imagine what the office must be like, with people comically crashing into each other and slipping on banana peels.

I have asked them before about how membership applications are scrutinised – they are not, beyond noting the applicant has an interest in healthcare. you do not have to be a doctor or any kind or regular, regulated healthcare professional.

The RSM is currently running a campaign for funds – selling a space on its Wall of Honour – glass screens engraved with the name of the person you want to see honoured. Self nomination allowed.£1000 please.And there are some very starnge names indeed including John McTimoney of McTimoney Chiropractic fame.

A number of Camists are now joining the RSM and then froudly claiming in their promotional literature that they “have been elected as fellow of the RSM”. Which is true. They have.

IMHO the RSM needs to attend to this issue if it is not to be brought into disrepute – but it is a very commercial organisation and is proud to have lay members.

(The next President is Sir Michael Rawlins, but he is no relation to meyself!)

I have met Dr. Barrett, and have friends who know him much better than I. I believe Mr. Stephens has himself libeled the good doctor by claiming he has never been a licensed physician, which isn’t at all difficult to confirm. He may have retired 18 years ago from medical practice, but his license is still active and in good standing.

It is also rather clear that Mr. Stephens is not an attorney simply from his statements. Aside from his appalling grammar, he seems to be unaware that in matters of criminal law in the US, grand juries do not determine guilt. They are charged with determining whether there is sufficient evidence to prosecute, nothing more. The unlikely event of a grand jury declaring the clinic “not guilty” does not mean that any form of prosecution had ever taken place, merely that accusations had been made.

Great stuff Andy. Others have already said it, but I’ll add my voice too: you have a lot of support here. Well done for standing up for the truth.

It would be laughable how utterly bogus their libel threats are were it not for the fact that any libel threat, no matter how bogus, is no laughing matter. But really, sending from a gmail account from someone who clearly isn’t a lawyer, has absolutely no idea about appropriate pre-action protocols, and can’t even mention a single sentence in your post that he believes to be factually inaccurate? It sounds like Burzynski has hired Laurel & Hardy for his legal team.

As both a scientist, and the spouse of a wife of 33 years who went through a 4+ year battle with Lymphoma before passing in December of 2009 I’d like to have the following entered into the official Le Canard Noir Record:

The “quantum quancer quackers” such as Burzynski, those who gather like lambs to the slaughter to try and take advantage of desperate and naive people with their quackery, should simply be ridiculed, laughed at, mocked and ignored.

Why offer them anything more than they do to the victims of their quackery?

Here is what I publish on my own site,

The only people who would be expected to complain about the contents of this site are those whose beliefs or practices are criticized and exposed by the information here.

Anonymous complaints are ridiculed, laughed at, mocked and ignored.

Complaints from real people are read, filed, published on this site, and again laughed at, mocked and ignored, unless evidence is offered of inaccuracy in something appearing on the site.

I wish I could put this as succinctly as my “new most excellent anonymous friend” anarchist teapot did, however I have never been known for utilizing an “economy of words.”

I can say (albeit long windily) “Dr.’s Barrett, Hall, Orac” and others at “Quackwatch” keep up with your postings on Burzynski et al, as I’m the member of the forum who consistently links to your site.

Don’t be bullied, and don’t discontinue your posting, it’s important work for a 21st century society to stop this pseudo-scientific mind mush and nonsense, and as I say on my own site:

“Debunk The Dubious, Quantify The Quacks, and advocate transparency in government and medicine by fostering a secular society based upon critical thinking, science, reason and Pastafarianism”

Keep a good spirt and a sense of humor about it all, as

1. “long run is a misleading guide to current affairs, in the long run we are all dead”

2. “creationists make it sound as though a ‘theory’ is something you dreamt up after being drunk all night”

and remember as theoretical physicist Wolfgang Pauli said about the ever credulous, “Dr” Burzynski long before the narcissistic nonsensical neophyte ever started espousing his quackery,

Burzynski’s,

3. “not even wrong,” i.e., an expression, that we scientists use to describe the lowest rung on the intellectual ladder; Levels of ignorance–like many wrong ideas and opinions–that are so completely useless as to be a waste of time.

Both Mr. “Stephens” and “Dr. Burzynski” clearly avail themselves of the philosophy that

4. “I’ll get my facts first, and then I can distort them as I please,”

and

5. “before I refuse to take your questions, I have an opening statement.”

Lastly, I believe I can unequivocally state that we here at “Quackwatch” are all with you, best to your wife and new baby and may “his noodliness” the “flying spaghetti monster” bless you and “touch you with his noodly appendage”

If “Mr. Stephens” or any other “pseudo-lawyers” contact you with “cease and desist” letters, and/or emails, please free to tell them I said to address their complaints/issues either here:

P.S. There’s an actor in the U.S. named Ashton Kutcher who has made a career out of what we call “punking”

As it relates to “Dr” Burzynski it would go something like this:

One dubious “medical facility” located at 9432 Katy Parkway, in the I-10 Business Park, Houston, Texas, USA, curiously registered with the Harris County Texas, Tax Assessors Office to Gregmont Investments LLC c/o Stanislaw Burzynski,
SIX MILLION DOLLARS,

Obfuscatory reference’s to neoplasms by virtue of the quackery laughingly called anti-neoplatons, coined for a group of simple peptides, amino acid derivatives and human urine,

Whatever it costs for a “web master, web site and search engine optimization” to publish non-peer reviewed cheap anecdotal testimonials spammed all over the internet

Having the last laugh by doing the right thing, exposing and punking Stanislaw Burzynski and seeing him either

It’s amazing how angry people get when you threaten their income stream, even when it is from vulnerable cancer patients who will grasp at any straw when told that there is a cure that “doctors don’t want you to know about.” People like this bring so much suffering and guilt to patients, their families, and the friends around them, many of whom are shaken down for money for useless treatments. You have my full support. Thank God the US libel laws are more sensible than those of the UK.

Wow. I will gladly begin also spreading word on this harassment you are experiencing. Last night I was, coincidentally, with family and friends and someone brought up “antineoplastons.” We live near NYC here in the US and for decades certain radio personalities have been highly promoting Burzynski. I gave a short run-down, to the person, on the therapy’s lack of evidence, and the difference between the weaker “evidence-based” model and the more rigorous “science-based” model anyway. It would be quite a shame if such a ‘false hope’ treatment route was taken and standard cancer therapy wasn’t.

Good luck with this! Its great to see someone not taking the empty threats of litigious quacks. It really is appalling that they’ve been able to get away with taking advantage of vulnerable people for so long.

It looks like if any legal threats are carried through with they might well be met with quite a formidable wall of defence!

That itself obviously doesn’t disprove their efficacy or effectiveness, but does rather undermine their complaints.

Further, if proponents of antineoplaston therapy are so sure it works then I can’t help but feel that their time and money would be better spent proving it and spreading the good news than dragging well intentioned individuals through court ( or even threatening to do so ).

Threatening legal action while refusing to identify the specific issues which they’re complaining about seems to be the exact opposite of spending their time to achieve what they must surely see as the common good.

Of all the potential “turn offs” for this therapy, the unprofessional communications from Marc Stephen must rank fairly highly.

As someone who has also been repeatedly threatened and had an unsuccessful attempt at a SLAPP filed against me for speaking out against questionable practices, you have my full support. If they sincerely believe your facts to be inaccurate, let them name them. One thing I learned from my own experience is that people who have no substantive rebuttals to my concerns, quickly resort to either legal threats, internet smear campaigns or both.

You might want to consider adding the threat you received to the Citizen Media Law legal threats online database.

And we are working on an english article to increase the pressure on this dangerous quack. Should you have any expenses due to this affair, do not hesitate to contact us at info at esowatch dot com, we are eager to help you raise funds if needed.

Well done, keep up the great work. As you know, buffoons and quacks always make good use of weasel words and intimidating language, but their use of grammatically correct and semantically plausible language always shows them to be the raving fools that they are.

If you ever launch a fund to legally fight one of these idiots, or defend yourself against their mad ravings, I’ll gladly contribute.

Well done, keep up the great work. As you know, buffoons and quacks always make good use of weasel words and intimidating language, but their use of grammatically correct and semantically plausible language always shows them to be the raving fools that they are.

If you ever launch a fund to legally fight one of these idiots, or defend yourself against their mad ravings, I’ll gladly contribute.

Best wishes to you and your wife and your child.

PS there seems to be something wrong with the CAPTCHA function. I tried to post, got a wrong CAPTCHA code message, tried listening to is, and it was a different code from that displayed on the screen. I’m now trying again…

There seems to be something wrong with the CAPTCHA function. I tried to post, got a wrong CAPTCHA code message, tried again, same thing happened. I listened to the code, and it was a different code from that displayed on the screen. I tried a fresh post, and it worked.

Brilliant and understated correct response. This guy sounds like the all-time troll of trolls and is just fighting with insults and mis-direction. Methinks he will come seriously unstuck if he carries this through.

That’s not the first time, either. His work was written up in 1990s as well. And then there is this recent work at the National Cancer Institute:

Overall Level of Evidence for Antineoplastons

To assist readers in evaluating the results of human studies of complementary and alternative medicine (CAM) treatments for cancer, the strength of the evidence (i.e., the “levels of evidence”) associated with each type of treatment is provided whenever possible. To qualify for a level of evidence analysis, a study must:

•Be published in a peer-reviewed scientific journal.
•Report on a therapeutic outcome or outcomes, such as tumor response, improvement in survival, or measured improvement in quality of life.
•Describe clinical findings in sufficient detail that a meaningful evaluation can be made.

Antineoplaston therapy has been studied as a complementary and alternative therapy for cancer. Case reports, phase I toxicity studies, and some phase II clinical studies examining the effectiveness of antineoplaston therapy have been published. For the most part, these publications have been authored by the developer of the therapy, Dr. Burzynski, in conjunction with his associates at the Burzynski Clinic. Although these studies often report remissions, other investigators have not been successful in duplicating these results.

Thanks, Andy. The more I know about Burzynski’s seemingly endless quest and his awful lack of transparency about his mythical cures, the more frustrated I am. This case (Billie), with all its operatic pathos, is so very hard to engage rationally in the soundbite sensationalist venue of TV/radio. Your usual compassion and clarity come through in these posts. If the Marc Stephens guy really is attached to him, my opinion of Burzynski has dropped even lower.

I suspect that Stephens is suggesting that the problem sentence is “Dr Stanislaw Burzynski has been on trial for cancer fraud.” If the trial was not, in fact, a trial for charges of fraud, then the accusation of fraud is libelous per se. You derived the claim, as per your link, from the March/April 1997 NCAHF News. If your statement were an exact quotation from the NCAHF News, then you’d probably be safe even if it were in error, under the precedent set–ironically enough–by Barrett v. Rosenthal (https://en.wikipedia.org/wiki/Barrett_v._Rosenthal), which was alluded to in the threats.

Looks like the FDA beatup the Inst. Rev. Brd. pretty bad. Was the IRB a surrogate for the clinic, and if so why not come down directly on the clinic. It appears that patients underwent treatment w/o concurrence (or knowledge?) of the board. This is so ethically muddled I’m surprised no had their hand slapped. More specifically I think the FDA looks like they completely failed to protect patients.

MAS has included Doubtful News in his latest rant at 6:14 PM Eastern US standard time (nearly 3 hours ago) and made some stunningly silly accusations. All we did was link to this piece. That is not libelous. Since the feed shows up on skeptic.com (U.S. site), he has implicated them as well, which is ridiculous.

Marc Stephens has done a lot of mugging up on legal terminology – not to mention spelling and grammar – since March, when in a series of amateurish, misspelled emails he gave me a deadline of March 31st 2011 to retract and apologise for my answer to this question on Yahoo!Answers:

The email exchange is available on request; threats, false claims that he knew my name and address (bless his cotton socks, he concluded by googling my Y!A posts that Liverpool is a suburb of London, and that I lived there; the two cities are a couple of hundred miles apart and I don’t live in either of them) and repeated promises of legal action.

Eight months on, and silence from this idiot – who isn’t a lawyer or even a representative of the Burzynski clinic.

Hi – some legal thoughts if you have any further rounds of correspondence with these jokers:

– you should say that the tone and content of his correspondence makes it difficult for you to take it seriously. He has not even identified the jurisdiction in which he plans to take action against you.
– If it is the United States, then New York Times Co. v. Sullivan would seem to create insuperable difficulties for him; furthermore you are not a US resident and have no assets in the US, so you are not sure how such proceedings would be of any relevance.
– If it is the English courts then he may wish to familiarise himself with the pre-action protocol. As you have already identified, his failure to identify the essential elements of his purported case breaches the pre-action protocol. Accordingly in the event he does commence legal action in the English courts, you would expect to make an application for all of your legal costs to be borne by Burzynski; accordingly even in the highly unlikely event that his action were to succeed, he would likely still be considerably out of pocket. Furthermore, you reserve your rights to apply for a wasted costs order (i.e. so those costs would become the personal liability of Burzynski’s legal representatives). In addition, given that his client is outside the jurisdiction, you would apply for Burzynski to make a payment on account of costs at the outset of any litigation.

In conclusion, Stephens may wish to seek legal advice from qualified counsel before he takes any further steps that may result in significant detriment to his client and to himself.

“To begin with, the inventor of antineoplastons, their manufacturer, proprietor of the clinic that offers the alternative therapy, and the principal investigator on clinical trials are all the same man: Stanislaw Burzynski, a Polish-trained physician who initially produced antineoplastons by extracting them from human urine.

Working outside peer review, Burzynski is conducting 71 concurrent, preliminary phase II trials that cover most cancer indications-an unheard of number for a single investigator, and for a drug which is yet to be proven effective for any indication.

These trials are fundamentally flawed in design and execution, said three experts after reviewing the Burzynski Research Institute’s 1997 annual report to the Food and Drug Administration….”

The Burzynski Movie was superb and the Antineoplastons treatment seems to generate results for some patients. I read all the comments above, I don’t understand what is wrong with the Antineoplastons treatment option?

Could you please provide us with the titles, journals, dates of papers submitted by Burzynski to the peer reviewed literature on his clinical trials that are less than three years old? Remember only papers to high ranking peer reviewed journals (like “Cancer” and not “Medical Hypothesis”) submitted in 2011, 2010 and 2009.

Well, Ken, that is why I asked to for that real research. A film, especially one produced as a public relations vehicle, is not a scientific citation. So, really, go and tell us what the recent results have been published in high quality peer reviewed journals by Burzynski, and where his results have been independently replicated.

Or, perhaps you think the Trollhunter is a real documentary and the Norwegian government is really trying to hide existence of trolls.

Another thing that seems to be very wrong with this option is that after so many years of “trials” there still isn’t enough positive proof to get funding from ANYONE other than the patients themselves – even if I bought the “pharmaceutical companies would rather sell their own product than fund studies for a new treatment” (actually, if a pharmaceutical company knew that this stuff was all Burzynski says it is they would offer him a lots and lots of money because they could expect huge earnings from a true “cure for most cancers” – just because you can cure them doesn’t mean nobody will ever get cancer again, and a lot of money is paid for treatments that aim at prolonging patients’ lives and making them suffer less. You can’t tell me publicly funded healthcare systems like those many European countries have would pay for that but not for curing patients.), but I don’t buy it that there’s no government, interest group or rich philanthropist in the whole world that will fund a high quality trial of a promising cancer treatment to prove it works, so the only option Burzynski has is to take tens of thousands of his patients’ money.

What is “wrong” with antineoplastons? Have you actually read any of the information on websites linked to in previous comments? At best, this therapy is “not proven to work”, despite many years of “research” apparently conducted by the Burzynski clinic. The few independent studies done on antineoplastons were unable to reproduce any of the positive results that the Burzynski clinic claims to have made. No publications in peer-reviewed journals since 2006 – sorry, but recent claimed publications in journal supplements are not peer-reviewed and therefore not listed in PubMed. As for the “movie” i suggest you look up the term “infomercial”.
There is plenty wrong with antineoplastons. Reputable scientists and cancer research organisations say that antineoplastons are not proved to work – many would say they are proven not to work. And then there’s the cost, i.e. paying to take part in a “clinical trial”. http://www.zenosblog.com/2011/11/big-business-in-texas/

Good point regarding jurisdiction, Marc. For an example of how difficult it is for a plaintiff in an internet defamation suit to obtain jurisdiction over a defendant from another state in the US, let alone another country, the content of my own dismissal hearing where our highly competent legal counsel had a lawsuit against me and several others dismissed, is most informative. Just because a posting can be read in a certain location, does not mean that there is jurisdiction, as our plaintiff learned. Anyone contemplating such a lawsuit, will find this example of my dismissal hearing transcript from a US Federal court (Eastern District Court of Virginia), quite informative:http://tinyurl.com/3o9fmnf

And even if they do get past jurisdiction, there is the increased burden of proof borne by public figures. It would be wise indeed for anyone contemplating such action to seek legal counsel from someone knowledgeable of case law in this area.

There needn’t be anything wrong with antineoplaston treatment for there to be a problem. What is wrong is that there hasn’t been adequate demonstration that there’s anything right with it. For instance, there’s a complete lack of any independent reproduction of the clinic’s results. Antineoplaston treatment might work, after all, but we’ll never know one way or the other without appropriate controls and replication.

In the “red flag” category, there is no single disease called “cancer”. Cancer is a broad array of diseases. It is highly unlikely that any single treatment would be effective against all, or even most of them. The fact that the “trials” have been in progress for over 30 years, combined with the lack of any approval by regulators to use the treatment in anything other than clinical trials hints that the trials are merely a regulatory dodge rather than a serious attempt at scientific research.

I believe all of the above was stated, among other things, in the original article. I suggest you read it again (there’s a link to the original article at the top of this one). I would also recommend reading up on the scientific method, reversion to the mean, and the placebo response.

These people (Burzynski and his flack, Stephens) are pathetic. Why haven’t the authorities shut them down? Taking one’s ailing child to one of these quacks is as fruitless as consulting a faith healer (although the faith healer may be cheaper). The ensuing tragic outcome, however, will be no less painful. My heart aches for this family, and I send them my heartfelt good wishes.

Mr. Stephens may not explicitly claim to be a lawyer, but his letters certainly create that impression. (Except for not reading like they were written by competent counsel, that is.) At least one reported case has held similar conduct to qualify as the unauthorized practice of law in Texas.

It may be a distraction from the main issue but I think you could reasonably report this to the Unauthorized Practice of Law Committee of the TX Bar. They have an online complaint form, and it’s just a matter of informing them of the facts so they can decide whether to take action.

My son Ben died of DIPG in 2006 and I’ve spent the last 5 years helping other families through several non-profits. Many of them come to us with questions on Burzynski. Its difficult to give them straight answers due to the PR machine that they employ to silence direct criticism like your post. Thank you for posting a very clear article on how his clinic works and how it exploits the desperate fight that these families are in to save their child’s life. And thank you for posting the falsely threatening letters from his PR machine.

Well done, and congratulations on the arrival of your daughter.
It is a nice bit of blogging, and I think it seems to have spread the word.
I do, really, hate this sort of stuff. My father died of cancer, we’d have done “anything” to save him. This sort of stuff just makes me weep with impotent rage.
Well done you, I think you are a special kind of wonderful.
Hope all is well with you, and yours.
Magdalen

Thanks for doing this, well done. I hope the readers’ editor of the Observer takes the trouble to look at this page. In its way, it’s more revealing than some of the pseudoscientific arguments which have gone on around this issue. Truthfully, this guy is doing Burzynski no favours.

I have very little time for bullies and I therefore extend the invitation for Marc Stephens to osculate my arse with his greasy lips. Rest assured Ben Goldacre is one of a number of formidable allies on your side. I note your case has come to the attention of Stephen Fry, who has some 3.4 million followers on Twitter. You have my full support Andy and I hope together we can all bring some pressure on the Observer to publish a more vigorous investigation into the activities of Burzynski.

These responses didn’t emanate from Nigeria by any chance did they. If this is a PR ‘person’ then we can see where a lot of wasted money goes. Certainly if this is a reflection of this clinic’s medical capabilities it is very concerning indeed. I fully expected to hear hints about horse’s heads in your bed as a final warning. The Observer should clearly be ashamed of such unquestioning journalism which does it no credit at all.

I can only say this type of action by “the clinic” is totally uncalled for and wrong in every way. I would hope that a great many people associated to this clinic are not happy with the actions of Mr Stephens, as I was not happy with the actions of some of my profession when responding to Simon Singh.

Jesus, Marc Stephens, what a cretin.
If his “legal” work is an example of the standards they set in other areas they operate in, I would suggest very dubious indeed.
I am almost tempted to find a way to bait this character myself, although I am sure it would be too easy…
Keep up the good work though, this kind of thing needs exposing.

So, ” The days of no one pursuing you is over. Quackwatch, Ratbags, and the rest of you Skeptics days are numbered” FINALLY! All I can say is PLEEEEASE take us skeptics to task. Bring us to court and PROVE WE ARE LYING when we call fake medicine fake, poor science poor and psychics con artists.

I’m not an expert on American law, but in the similar system here in England and Wales there is a principal that merely calling something by a certain term is not good evidence that it is that thing.

For example, it common for employers to claim their employees are ‘self-employed’, but the courts don’t care two hoots what term the employer uses and will look at the real relationship.

Similarly, because it is unlawful to try to charge a large sum as a penalty for breach of contract, people will often claim it is ‘agreed damages’ or some other term. Again, the courts will ignore this and look at the tru situation.

Here we have this clinic claiming that what they are doing is a series of trials. It happens that it is illegal to give treatment, but not to run trials. The same rule applies. If they are advertising it for the purposes of a treatment, making claims about it, and charging a fee, it matters not one iota whether they use the term ‘trial’. The courts will look at the true situation.

Keep it up son, I’ve just spent three hours following links and reading the threats.

It reminds me of the more hilarious ‘claims’ sent to the Board of the company I worked for… ramblings of the demented and self-serving. One woman claimed our company (a communications company) had cloned her without her consent and was claiming damages of £250,000 for her *and each of her five clones*. Plus, her parents (who had apparently once worked for us, in Haiti, although we don’t have any dealings there)and who were now dead and living on the moon, would make sure we were called to account when they returned…

Seriously. You can’t make it up. And Mr Stephens’ replies remind me of that. English is clearly not his first language. Dawkins help us if it is.

Interestingly (to me), this person’s corespondence with you sounds a great deal like the sort of pseudo-legal drivel that 419 scammers (the infamous West African “I am a Nigerian prince”) use. They throw out a script that sounds official and important but if challenged they quicklt devolve into “you must listen to me” and various threats.

It’s funny everyone is so dead set on Dr. Burzynski being a scam. But why don’t you all take a look at the success rates from his so called “scams”. So far no one has even looked into seeing if it works or not. And what is more important? Saving human lives or sitting around talking out of our asses. I am a full believer of Dr. Burzynski and his work. I am a believer because I am a cancer survivor because of him. 12 Years ago my husband was diagnosed with prostate cancer. He went through radiation and chemotherapy and ended up dying because of radiation poisoning. When I got diagnosed with lung cancer in 2001 the doctors told me I had 6 months to live. I decided to go a different route. I went to Dr. Burzynski and my cancer completely disappeared by april the following year. I have been cancer free ever since. So all of you need to open your eyes and stop being blinded by what ONE person says

But why don’t you all take a look at the success rates from his so called “scams”. So far no one has even looked into seeing if it works or not.

Oh, excellent! Just provide us the independent replications of Burzynski’s methods, and the results of the clinical trials that Burzynski has submitted to a high impact journal in the last three years. Provide us the title, journal and date of the papers where he tabulates his results, all more recent than 2009. That is all you have to do to prove to us it works.

wow Chris, Shelly beleives this man and this treatment saved her life and you want her to provide “independent replications of Burzynski’s methods, and the results of the clinical trials that Burzynski has submitted to a high impact journal in the last three years”
And this just proves what a complete lack of understanding you must have.”That is all you have to do to prove to us it works.”!!!!

Marc Stephans is a horrible grammarian, not just IMHO:
…when I present to the juror that my client and his cancer treatment has went up against…
Marc Stephans means ‘has gone’
…I suggest you spend more time with your new child then posting lies…
he means ‘than’ not ‘then.’
I think he was threatening your family. I think his reach is probably as long as his junk, ≤2″, but let me know if you need any help. I’ve been deflecting patients from nonsensical alternative medicine for years, frequently with quackwatch links. My license is in good standing in Maryland since 1992, and I’m boarded and re-Boarded in Internal Medicine.

Alain Braillon MD PhD http://braillon.net/alain/
Senior consultant (tenured at the national exam, score 150/150) sacked for whistleblowing by the French Dept of Health against the vote of more than 70% of the members of the National Statutory Committee. Meanwhile my boss, chairman of the addiction committee at the National academy of medicine, is being sued for libel by the tobacconists’ union.

What do you say to the Burzynski Clinic’s patients who travel to Washington, DC from all over the country to testify on Dr. Burzynski’s behalf for curing their cancers or begging the committee not to stop the treatments that are saving their lives? …. Or have you not bothered to read the testimony given in the FDA vs. Dr. Stanilaw Burzynski case?

Are you, too, being paid by the pharmaceutical giants to try to put Dr. Burzynski out of business before his much more successful treatment of and cure for cancer (with little to no side effects) renders current treatments obsolete thus causing millions if not billions of dollars in lost revenue for the pharmaceutical ‘nazis’ behind the propaganda against and over thirty years of harrasment of Dr. Burzynski, first, by the Texas Medical Board then (when Texas courts told the medical board to knock off the baseless persecution of the doctor) the FDA department partially (if not fully) owned by the pharmaceutical companies?